Kingsnorth Shauna, Hamdani Yani, Cheng Clare, Lindsay Sally, Maxwell Joanne, Colantonio Angela, Bayley Mark, Macarthur Colin
Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
Health Care Transit. 2023 Jun 21;1:100004. doi: 10.1016/j.hctj.2023.100004. eCollection 2023.
Adolescents with physical disabilities of childhood often require a transition from pediatric to adult systems as part of life-long, comprehensive health care once they reach 18 years of age. The process of transition can be complex, challenging, and influenced by health-related factors and availability of health care resources.
To provide a baseline profile of health-related quality of life, health management, social participation, and health care utilization for adolescents 16 years of age with spina bifida (SB), acquired brain injury (ABI), or cerebral palsy (CP) in Toronto, Canada.
A cross-sectional survey design was used. A sample was drawn from a large, urban pediatric rehabilitation hospital as part of a prospective, longitudinal, observational mixed-methods study. Seven English language, paper-copy standardized measures were completed; measures were organized across the three domains of interest. Health care utilization data were obtained from population-based, health services administrative datasets held by ICES. These data included outpatient physician visits, emergency department visits, and hospitalizations over a 12-month period, beginning at their 16th birthday.
The sample comprised 99 participants: survey measures were completed by 59 participants (12 SB, 19 ABI, and 28 CP) and health care utilization obtained for 92 participants (19 SB, 25 ABI, and 48 CP). Baseline scores across measures and rates of health care utilization are provided. All three groups reported relatively good health-related quality of life. Youth with CP had lower scores on health utility, health management, and social participation, compared with the SB and ABI groups. Youth with SB had slightly higher health care utilization in the 12-month period after their 16th birthday, compared with the ABI and CP groups.
This cross-sectional survey collected comprehensive health status and health care utilization data on 16-year-old youth with SB, ABI, and CP in Toronto, Canada. With few exceptions, the CP group consistently scored lower across measurement domains. These baseline data may be useful for hospital administrators, policy makers, and researchers examining changes in health-related quality of life, health management, social participation, and health care utilization among youth with SB, ABI, and CP, particularly in the context of transition planning and evaluation.
患有儿童期身体残疾的青少年一旦年满18岁，作为终身综合医疗保健的一部分，通常需要从儿科系统过渡到成人系统。过渡过程可能很复杂、具有挑战性，并受到健康相关因素和医疗保健资源可用性的影响。
为加拿大多伦多16岁患有脊柱裂（SB）、获得性脑损伤（ABI）或脑瘫（CP）的青少年提供与健康相关的生活质量、健康管理、社会参与和医疗保健利用情况的基线概况。
采用横断面调查设计。作为一项前瞻性、纵向、观察性混合方法研究的一部分，从一家大型城市儿科康复医院抽取样本。完成了七项英语纸质版标准化测量；测量指标按三个感兴趣的领域进行组织。医疗保健利用数据来自ICES持有的基于人群的健康服务管理数据集。这些数据包括从他们16岁生日开始的12个月期间的门诊就诊、急诊科就诊和住院情况。
样本包括99名参与者：59名参与者（12名脊柱裂、19名获得性脑损伤和28名脑瘫）完成了调查测量，92名参与者（19名脊柱裂、25名获得性脑损伤和48名脑瘫）获得了医疗保健利用情况。提供了各项测量的基线分数和医疗保健利用率。所有三组报告的与健康相关的生活质量相对较好。与脊柱裂和获得性脑损伤组相比，脑瘫青年在健康效用、健康管理和社会参与方面得分较低。与获得性脑损伤和脑瘫组相比，脊柱裂青年在16岁生日后的12个月期间医疗保健利用率略高。
这项横断面调查收集了加拿大多伦多16岁患有脊柱裂、获得性脑损伤和脑瘫青少年的综合健康状况和医疗保健利用数据。除少数例外情况外，脑瘫组在各个测量领域的得分始终较低。这些基线数据可能对医院管理人员、政策制定者和研究人员有用，他们可据此研究患有脊柱裂、获得性脑损伤和脑瘫的青少年在与健康相关的生活质量、健康管理、社会参与和医疗保健利用方面的变化，特别是在过渡计划和评估的背景下。
